Just a heads up should anyone be in the vicinity of Manchester City centre on Wednesday 5th August I am volunteering for the Encephalitis society to raise awareness of this condition.
They will be set up in Piccadilly from 10am to 4pm in front of Queen Victoria's statue, there will be information, games to play and volunteers like me to share our stories.
Evidently there are 6,000 cases diagnosed in the UK each year but public awareness is very low.more than motor neurone disease and some forms of meningitis.
It costs the NHS around £40 million a year and this does not cover the cost of rehabilitation and the loss to the economy of the inability to return to work
Many sufferers of encephalitis do not survive and those that do can be left with far-reaching consequences.
Like many other health related societies, The Encephalitis Society does not receive government funding and does an amazing job supporting sufferers and their families.
So come along if you are in the vicinity, we would love to see you.
Thanks Janet
Written by
Kirk5w7
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Good luck with this. I am miles away on the sunny south coast but i hope you get a huge turn out and the sun shines for you. Awareness and sharing are so important and this will really help any families going through the aftermath of this horrible illness.
Sorry Janet, been dizzy for days so pretty unlikely for me..........what a shame about the timing. But good luck with the day & hope it stays fine for you. Love Eileen xxx
Hi Eileen, sorry to hear you are struggling at present.
My GP prescribed Prochlorperazine for me which helps, I can take it as needed, I find one a day means I can function a lot better and if I don't need it I don't have to take it.
Yes Janet, I've taken them (otherwise known as Stemetil) for 30 odd years and they do take the edge off, but not enough to provide the freedom to function properly.
I'm basically counting the days 'til my appointment with the endocrinologist but, at the same time, trying not to pin too much hope on it !
When's your appointment with the endocrinologist, my hospital appointment is at Oldham, but under Salford, on 16th or 18th August, if I look it up on my calendar I'll lose this message, I'm not hopeful either, the GP thinks I'll be given exercises to do, ill try anything, as I'm sure you would. Be interesting what you are told.
Must get an early night, have to be up early tomorrow, that's probably put the kiss of death on sleeping now.
It'll be fine, but thank you for the good wishes, if it's too much for me I'll come home, no problem, gone are the days I'd suffer in silence.
It was good, I managed 4 hours there and met some lovely people, it got a bit tears at times, because none of us had really met others that had had the same illness, there was a 9 year old boy there too an 18 year old, in all there was someone from all age groups.
There was lots of interest from people in general, and it helped show me what I can do.
That's the longest I've tried interacting with others, but it was great being with people who understand.
I'm off to bed soon cos I'm shattered but it was a good day.
Hope you are feeling better than earlier in the week.
Next, it's Jenny's sons wedding on Saturday, looking forward to that .
Sounds like it was a great success Janet ; I'm really pleased for you. And well done for such a long stint but I can understand how you're so shattered.
I hope the wedding goes well and the weather is kind to you all. And I hope Jenny doesn't find it too tiring.
Sorry I didn't reply to your query about my appointment. I've one with an endocrinologist at Wythenshawe on 3rd Sept. But, Hallelujah !........ I got a phonecall today re-inviting me for the trial at Salford owing to a cancellation, so I'm seeing them on 7th Sept.
So glad the day went well. If you are having any more of these would it be possible to give a little more notice - say maybe a fortnight ?
I would love to have attended ( even though I am a shadowy imposter in FND clothing LOL ! ) but would need to arrange time off work and transport. I am just outside Preston.
Hi Angela, you can join the society yourself it doesn't cost anything, then they'll keep you informed first hand of what's going on. They have weekend gatherings and other things from time to time. Just have a look at their website, Google Encephalitis society, it's like Headway in a way, it's a registered charity that exists to inform people, anyone. And also gives advice and support for those who have suffered or their families or loved ones.
I feel guilty because I've never bothered with anything before, but it was such a good experience and they were all lovely, so join and who knows I may see you sometime at one of their gatherings xxxx
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